5 Reasons I’m Grateful for Down Syndrome

“Are you twins?” a lady asked us once.

We’re not. Katie is 4 years younger, 1 inch shorter, and probably at least 25% cuter than me. (Which I like to think is a high bar.) Yet aside from that and the Down syndrome, we look remarkably similar, and anyone who looks at us can tell that we’re close.

According to popular narratives, I’m supposed to be the sad neglected sibling whose life is full of selfless sacrifice. Yet the reality of Down syndrome is a lot more complex and definitely a lot more fun. I can’t tell my sister’s story for her, but I can share the reasons why I’m happy she is exactly the way she is.

5. She reminds me to check my priorities.

Katie, a young woman with Down syndrome, smiling holding a painted rock that says love yourself
How can I not listen to that smile?

It’s easy to get caught up in the idea that intelligence is everything. School can prioritize test scores and academic achievement over everything else. When you’re labeled as “gifted,” the message that intelligence is everything becomes even more intense.

Yet while I studied AP coursework until my head hurt, my sister remained a constant reminder that intelligence isn’t the only positive trait a person can have. Concepts like calculus, algorithms, and persuasive essays are beyond her. But that doesn’t matter when she makes a new friend or sings the national anthem at a school assembly. Life with an intellectual disability can be a full life.

During my teen years, it was too easy to feel like a prisoner of my academic potential. Katie helped me learn to get off the endless self-improvement treadmill and take time to just have fun.

4. There’s freedom in so-called “obligations.”

Katie gives the camera two thumbs up as her hair is braided
Preparing for prom

I help take care of my sister. I usually come home from college on the weekends and spend time babysitting her so that my parents can go out. It’s not the most efficient arrangement, but I consider it quite advantageous.

Oh, my programming team wants me to make a ton of changes at the last minute over the weekend with no notice? I’ll do my best, but you have to remember, I have a sister to take care of.

There’s an optional social event that I really don’t want to attend? No can do, I’ve got a sister at home who needs me.

What, you want me to be available 24/7? I’m afraid I can’t; my sister has Down syndrome 24/7 and I’m needed at home.

Home responsibilities aren’t just things I have to do, but protections from unreasonable demands and scheduling vampires that would eat up all my time while delivering little of value in return. Caring for my sister offers balance in my life, and it’s a convenient excuse in a world that too often demands that people be always “on” and always working.

I like to step away to spend time with my sister. I have fun with her, and then when I return to school or work, I’m recharged and ready to go.

3. Getting along with her is easy.

blurry photo of Katie with the game Trouble
She let me win.

Sisters don’t always get along. But Katie and I are happy with each other at least 98% of the time. (The other 2% of the time is definitely her fault.)

The constant positivity of Down syndrome is a myth: teens with Down syndrome do slam doors, roll their eyes, and experience grumpy moods. But Katie’s disposition is happy overall, and her baseline mood is pretty good.

Katie wants to get along with me. She wants to hang out and have fun. She doesn’t pick fights or call names or do any of the stuff I hear that sisters are capable of. As far as I’m concerned, I ended up with a pretty easy sister to have.

2. We have fun without obsessing over expectations.

Katie grinning while scrambling a Rubik's cube
Katie and I do lots of things purely for fun.

Spending time with Katie means letting go of any high standards and just enjoying myself.

We can sing off-key to the radio. We can draw pictures with flawed anatomy in crayon. And we can watch bad movies and fall over during yoga and dress in clothes that don’t match. I want to make her laugh, all I need to do is make a weird face or misunderstand her words and she’ll find it hilarious.

Unless you’re stealing other people’s French fries, Katie doesn’t judge. It’s a wonderful reminder that I don’t have to be a perfectionist.

In a fast-paced world that focuses on performance, nothing is quite as relaxing as spending time with someone who doesn’t care if my socks don’t match.

1. I have an amazing sister.

Katie grinning in a colorful straw hat
We went hat shopping.

Down syndrome has always been part of Katie, and it always will. I could try to imagine her without it, but it’s like picturing a stranger in my house. Down syndrome is who she is, and I wouldn’t have her any other way.

Unconditional love means loving every part of someone. And I love Down syndrome. I love the unique shape of her eyes, the contours of her chubby face, and her loud off-key singing voice. Down syndrome is part of what makes Katie be Katie, and I wouldn’t change her for the world.

Frankly, I wish everyone had someone like Katie in their lives. We all need someone who can help us relax and just have fun.

Originally shared on Medium

8 thoughts on “5 Reasons I’m Grateful for Down Syndrome”

    1. Thank you so much, Barbara! I feel lucky to have her. So many people focus on external achievements, but she reminds me to look for true sources of happiness. Besides, it’s fun to live with your best friend!

  1. As someone with slight disability, I have always had troubled relationship with my siblings, though I always longed for their love. They are in their mid 30s, yet hold me guilty for stealing their parents from them during their teens for my treatment. And that comes out as bottled anger at times. I envy your sister, that she has someone who understands, listens to her by her side!

    Thank you for sharing! Please do keep writing, I am sure it will touch many lives!

    1. I’m sorry to hear that your siblings have blamed you for something that isn’t your fault. You can’t control your needs. And if your parents made parenting mistakes while raising your siblings, then those are their mistakes, not yours.

      I got a little jealous as a young child sometimes, but I matured and got over it. My sister gets more help, but it’s because she needs it. I also receive help when I need it. When I don’t agree with my parents, I recognize that they are the ones who made those choices, not my sister.

      It’s sad to hear that your siblings are still distant and holding resentment. Your needs, and any mistakes your parents made, are not your fault.

  2. Love this post Jenna. It made me smile. My older Kirsty has Down syndrome. She is 19. My younger daughter Melissa is 13. They love each other so much and yet argue like any other siblings. They have a strong relationship. Katie is beautiful.

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